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“He is quite capable of going into a seizure that is basically all the time — all day and all night,” Greenwood said.
July 5 Preston wakes up for a moment during a series of myoclonic cluster seizures caused by Dravet syndrome. Preston can have hundreds of “blinky” or “butterfly” seizures per session. If the cycle is not broken, it can lead to grand mal seizures.
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Her hopes for a new life seem to be coming true.
“The vast majority of people, if they were going to respond, had a dramatic reduction of seizures,” Maa said. “That doesn’t represent the larger, global number of people who had exposure to it. We don’t know those true numbers yet.”
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July 1 Don Raynor and daughter Ana Watson go over the real estate application for a house Ana wants to rent in Colorado Springs. Don reads everything very carefully: He is worried about Ana being so far from home and whether her income will cover everything she and the kids will need.
There have been times Blake would have a seizure every half hour, and his mother, Stacy Lynch, would worry how he would get through the night.
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He can have hundreds of blinkies a day. And, though they usually pass gently, each one is like an eraser across his brain’s chalkboard. Over and over, new development is wiped clean by the seizures. So, over and over, he learns the same things.
“Silly mommy,” he says to Ana, as she snuggles into a single hospital bed with him.
After Preston’s birth, the doctors told Ana that his strange leg twitches were common — the result of underdeveloped musles. It was three months later that she learned the doctors were wrong.
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But no one knows more than anecdotes because Colorado does not track how many families come to treat their children with medical marijuana — although it’s in the low hundreds — or where they go.
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Preston rests on his porch
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